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When I was at my worst, dealing with multiple health issues and a particularly jerky doctor, I got some good advice about appointments. The advice was to go into appointments with 3 “big” questions. You open the appointment with these three high level questions. Something like, “these are the three things I need help with,” or “these are the questions I have, and I know your time is valuable, can we start with my questions,” whatever language works for you. You can even email these questions to your doctor in advance. You’re basically agenda setting. The hope is that you don’t leave frustrated with your questions unanswered (I had a real jerk, and I would be outside a city hospital in tears). Inevitably, symptoms and more details come up as you’re talking through your questions. You’re trying to flip control of the appt a bit to make sure you get what you need. I’m not sure if this is what you’re asking, but I really feel for you with a less than stellar doctor. I hope this appointment goes well!!!

It took me 2 years to get in complete remission with remicade with several dosage and frequency changes (see my signature). I was functional pretty quickly, but it took that long to get rid of all remaining symptoms. You sound like you are better but still have some pretty bad symptoms. Questions I would ask:
1) When should a blood test to check the remicade levels be done
2) At what point would a dosage or infusion frequency change be made
3) Is it possible to add oral/rectal meds to help control the worst of the symptoms until Remicade can fully take over

I used budensoside oral and hydrocortisone enemas for the 1st 3-4 months I was on remicade to help with the worst symptoms (frequency & urgency).

Hope the dr appt goes well and that you continue to improve!

I can't make suggestions regarding the meds you're now on, but I sure can suggest rectal retention enemas. If you can't use mesalamine, then request to be given the steroid ones as suggested by CCinPA. I stress the request part.
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The standard dose is 5 mg per kg body weight. So e.g. if you weigh 60 kg your dose would be 5x60 = 300 mg = 0.3 g = 0.0003 kg 😁

Sometimes it is worth increasing to 10mg/kg. Usually a (sensible) doctor will order a blood test to measure the levels of remicade in your blood just before your next infusion - this is known as the trough level, and depending on the result of that they may also test for antibodies to remicade.

I will be honest I would consider your symptoms as not very satisfactory after 3 infusions and think it is imperative to check for antibodies and depending on the result either increase the dose or switch to another medication.

Midge, so glad to read that you had a good appt with your dr. I am fortunate that my dr listens to me when I have questions & does not rush through my appt.

about those spasms, it's called tenesmus & can be awful to deal with. You need an antispasmodic, my dr prescribes generic Bentyl & it helps a great deal. If you have a patient portal send a message to your dr requesting this. If no patient portal make a phone call.

Take care.

I am glad your doctor took time with you and answered your questions, but I don't understand what she said about rectal meds. While they don't reach your entire colon they do treat the area that produces some of the most debilitating symptoms -- urgency and frequency -- that can really interfere with quality of life. You will still be able to tell if remicade is working since enemas don't treat the rest of the colon. If your quality of life is poor right now, ask for rectal meds. There's no reason to wait.

I second some of the replies that rectal meds are a must with this disease. The inflammation starts in the rectum and ends there as well and that area is also the most stubborn to treat. They may even help you avoid Remicade dose escalation/shorter period between infusions, although it sounds like with your calprotectin and symptoms that you needed it this time.
But definitely ask to try the rectals, start with mesalamine enemas as these have less side effects than the corticosteroid ones, before any dose escalation in the future. They are inconvenient to use but can be immensely helpful.
I hope you feel better soon Midge.

Tenesmus for me was mostly after a BM and felt like a hardening of my rectum or sphincter. It was extremely uncomfortable but it didn’t make me feel like I had to go but it felt like a muscle spasm after the BM. I asked for the antispasmodic dicyclomine (generic for bentyl) and it is a big help. I suggest you try it. You only take it as needed I understand drug hesitancy as I have it by the carload 😄 but it’s not like you have to take it often I didn’t find it much help while in a flare as I feel the inflammation was too much but I still take it occasionally. You might be surprised at how helpful it is, and if not , then at least you tried.